Erika Gleeson On Designing Inclusive Businesses By Listening To Neurodiverse Lived Experiences

Erika is a Senior Behaviour Specialist, the CEO/Founder of Autism Swim, a Director on multiple Boards, author, speaker, and inclusion advocate.

She has worked in the disability sector for 16 years, with a passion for inclusion and education. She is also a 2021 finalist for Australian of the Year due to the impact she has had in the sector.

Erika discusses improving the quality of life for people with diverse abilities through consciously designing and advocating for a more inclusive and understanding society.

Highlights from the interview (listen to the podcast for full details)

[Indio Myles] - To start off, could you please share a bit about your background and what led to your work in the inclusion and social impact space?

[Erika Gleeson] - I grew up in a somewhat small town called Port Macquarie. I went to university in Sydney to study Behavioural Science and then went on to do a postgraduate in Autism Studies. I didn’t have a clear understanding of where that was going to take me, I was just fascinated by the human brain and the ways in which the brains differ from one person to another through learning styles, trauma, all that sort of stuff. Straight out of university I got a job working in the disability sector, somebody just took a chance on me. As I said, it wasn't intentional from my point of view to go into that sector, but I remember on the first day of work coming home and saying this is the area of work I will be in for the rest of my career. I just knew it was where I was meant to be. For a long time, I was a senior behaviour specialist, which means I work (and I still do work) with people who have very complex behaviour challenges.

This job involved me flying around Australia a lot, and as part of that arrangement I stumbled across the startling drowning statistic that those on the autism spectrum are 160 times more likely to drown than their peers. As a result, Autism Swim was born.

Whilst I'm very embedded in the sector and I'm proud of a lot of the things that have happened, I must say the vast majority has been accidental. I've just been lucky enough to find something I'm incredibly passionate about.

As the CEO of Autism Swim, can you share a more about the organisation's activities and the problems it exists to address?

That frightful statistic was I guess the catalyst for Autism Swim existing. When I stumbled across that statistic, I became quite desperate for the clients I was working with to engage in aquatic services, whatever that looked like for them. But I struggled to find any services that would take them on due to their needs. This meant I was working with people in the highest possible risk category for drowning, yet I couldn’t find a single swimming lesson service for them to learn how to swim because they couldn't swim a stroke. That to me was outrageous, so I started providing pro bono training and support to swimming teachers in the hope they would be able to take my clients on. At this stage I had no intent of starting a business, in fact it was probably the last thing on my agenda at that point in time. But I didn't realise how big the problem space was, and it quickly became apparent that aquatics being not inclusive was both a national and international issue. It wasn't scalable or sustainable for me to continue to provide these services pro bono all over Australia, so I set up an online learning management system and online certification for aquatic providers. Whether they are allied health professionals, swimming, or surfing teachers, whoever it is working in the aquatic space can go online and become Autism Swim approved through an ongoing certification process.

This has resulted in there currently being Autism Swim approved providers in 29 countries around the world, it just goes to show the impact of technology and setting things up online to be scalable. Again, most of that was accidental, and that’s now our main bread and butter. But also, while you and I can both swim, that doesn't mean we're not going to drown. To combat that statistic, we had to delve quite deep into why this population group is at such a significant risk of drowning. Then we needed to develop a business solution to each of the associated problem spaces. In addition to the certification, we also run a modified children’s program called Nippers across a range of different beaches in Australia. We now have wandering and drowning prevention support to parents, and we have a free water safety app designed to teach children with a disability how to be safe in and around the water. If we can do each of those initiatives well, then we know we will have a significant impact on those drowning statistics, and ultimately, make aquatics inclusive, the mission of the organisation.

How has your background as a senior behaviour specialist impacted your approach to entrepreneurship and are there any key learnings you can share with our audience?

A lot of people don't even know what a senior behaviour specialist is or that we even exist. The role of a behaviour specialist involves fundamentally understanding why someone is engaging in a particular behaviour. A lot of the time these behaviours are quite complex and severe; only when you've developed an understanding of the why can you go ahead and develop protocols, programs, and solutions to ameliorate the behaviour. If I was to reflect on any synergy between the roles, there's in fact quite a lot.

When it comes to entrepreneurship, I still think the process is the same. You must understand the problem space and your why before you can go and develop the solutions, otherwise everything is just a band aid approach.

The processes are the same and both involve a lot of trial and error. You can go into entrepreneurship with the grandest business plan ever, but it could go out the window on day one. Just from trying to operationalise or feedback from your customers you may realise it's not quite right. You can go in with one train of mind, but you must remain very flexible. The thing with being a behaviour specialist as well is we must think very quickly. We have to adapt, and a lot of the time that's amidst chaos and things going wrong around us. You're the one who must be calm. That's the way it feels sometimes in start-up world’ is every day is just chaos and you at the end of the day reflect on what you did, and you realise you don’t exactly know what I did, but you also did 50,000 things today by putting out fires and solving problems! It's just chaos to be honest, and you must learn to work well and calmly amidst that. I’m naturally quite a pragmatic person, but I would like to think that other people's welfare always comes first. We could be tackling every possible solution under the sun, but if the team's welfare is not at the top of your priorities and people aren't feeling safe and happy at work, then what is it all for? To me, how the team feels is probably number one, which stems back to being a behaviour specialist and always putting your client’s welfare first. The other thing I can think of is that because of my background I'm far less risk averse than the average person.

I walk into scenarios where the risk profile is incredibly high, things could go wrong, and I must be on guard and ready to respond quite quickly. That also lends itself to entrepreneurship, because if you wrap yourself up in a bubble of being risk averse, then you're not going to get very far.

It's about being considered with taking risks, and obviously we need to think things through. We use risk matrices and all those trendy little tools, but ultimately there is significant risk associated with being in entrepreneurship.

What does enhancing the quality of life for diverse and disadvantaged communities look like? Does this require focusing on systems change?

This is another good question, because quality of life is such a buzz term as well as inclusion and accessibility. Fundamentally, people need to understand what it means to be inclusive and what it means to increase somebody's quality of life. In terms of my opinion, that fundamentally involves listening to those with lived experiences and learning from the past mistakes of the sector. In terms of mistakes there are a plethora, and the disability sector is about 40 years behind. Constantly be learning, evolving, and listening to those who have lived experience rather than speaking. Obviously in my clinical work I work a lot with individuals who are non-speaking, and they can’t speak for themselves. We can use a range of assessment tools to ascertain where the person's life is sitting across a range of different quality of life domains. Effectively it's about offering support to set someone's life up to be as ordinary as their peers. Just by virtue of the fact this person has a disability or has specific needs doesn't mean their life should look any different to somebody else their age. Unfortunately, whilst that notion sounds great, it's easier said than done when you live in a world built for neurotypicals. We've flipped the switch, once upon a time we looked at disability through a medical lens, which is that a person has a particular deficit, and it is their problem to learn how to live with it in this world.

We now adopt a social model of disability or inclusion, which is that it's the community's responsibility to be inclusive and cater to a range of different needs. It's not that person's responsibility, it's our responsibility, and so we need to learn to be educated and adaptive so that the world is fit for purpose for everybody.

What advice would you give to an entrepreneur who wants to make their business or organisation more inclusive?

Everybody you speak to might have a different opinion on this, and again I think chatting with people who have lived experience is a non-negotiable when it comes to making a business more accessible or inclusive. I don't think it's like a trickle-down effect or a slow burn or something you can just chip away at. To me, being inclusive requires a considered and conscious decision to update operations and policies which pertain to inclusion and accessibility. There's obviously a very strong business case for this with one in five people now having a disability. Similarly to quality of life, we need people to educate themselves on what inclusivity means, and it's not about ticking a box to say you have a ramp, which is what most people think it means. If they put a ramp out the front of their premises, they think they're absolutely killing it on the inclusiveness front.

It is about listening to those with lived experience about what they need to feel welcome, safe, and happy at your business, and then adopting these requests as the norm. Inclusion needs to become a core value of an organisation through culture shifts and the leadership accountability that comes with it.

It's forever evolving. and as I said it’s not something you can tick off and say, "we're now inclusive." It's about being on an ongoing pursuit of understanding inclusion and what things we need to operationalise. What is lived experience telling us and what terms have changed? The space is constantly evolving and changing, so there is a responsibility to keep abreast of that to make sure the business practices reflect the changing nature of the industry.

What inspiring projects or initiatives have you come across creating a positive change?

I'm lucky enough to be surrounded by so many incredible people doing amazing things; I can't help but use this opportunity to shout out a couple of my friends or associates who I'm super proud of working in completely different industries to me but doing such significant work. I have a good friend of mine named Joel [Pilgrim] who is the CEO and founder of an organisation called Waves of Wellness. This organisation is all about surf therapy, and they run a range of different initiatives, but it's basically about combining surfing and mental health together. They do fluoro Fridays and a lot of corporate mental health stuff as well, but I’m all about amalgamating things. Obviously with Autism Swim, it's putting inclusion and the water together, and to me it's just a bit of a no brainer. He has done that with the ocean and mental health which is cool. There is another organisation called Pink Elephants, and another friend of mine named Sam [Payne] started this organisation around miscarriage support. They have become Australia (and perhaps internationally) a go to organisation for anything to do with needing support around early miscarriage. Only last night, one of my clients who I used to work with, their mum sent me a clip about an organisation called Mates. This client is now a model, and this agency is specific to those on the autism spectrum. They're aligning themselves with inclusive clothing brands and doing cool things in the space.

To finish off, what books or resources would you recommend to our listeners?

I have been a bit of a junkie for professional and personal development over the years. I have listened to many podcasts and read many books about this topic, but then I got to the point where I was obsessing about productivity, and I felt it wasn't serving me anymore. I probably just need to take a little break and immerse my brain into some other things that weren't necessarily work related, so I don't have any work-based resources I can recommend of late. Some of the podcasts I'm listening to include a great one called The Imperfects which is very much about vulnerability. They get guests on there who are quite famous, and a lot of the time they seem from the outside to have their life together and have it all. They get on the podcast and talk about their vulnerabilities and the things they are challenged with, and they also have a resident psychologist on there. I think it's a nice podcast to listen to in terms of making us a little bit more vulnerable and realising the grass isn't always greener. I also love a bit of true crime, and I listen to a lot of clinical podcasts pertaining to my work as a behaviour specialist. In terms of books, I've just been on a bit of fiction bandwagon lately, so my two favourite authors of late are Jeanine Cummins and Craig Silvey, both of whom I've read all of their books which I think are extraordinary.